Del. Jeion Ward, D-Hampton, knows the importance of being able to get the drugs necessary to keep a chronic illness stable. Now 60, the 10-year veteran of the legislature was diagnosed with multiple sclerosis at age 40. She's dependent on a prescription medication that's so expensive that her pharmacist doesn't keep it on hand, so it's only available by mail.

In light of her personal experience, Ward signed on as co-patron to two bills introduced to the legislature this session to protect consumers dependent on Tier 4 drugs: One would have instituted a cap of $150 per prescription for the consumer, the other mandates a reasonable notice of a price change.

The payment cap bill was tabled before crossover, but HB 308 requiring a 30-day notice of any change in prescription pricing, and its sister Senate bill, appear on their way to approval. The Virginia Association of Health Plans, VAHP, a trade group representing insurance companies in Virginia, has dropped its opposition. "With the existing bills, we've met with all interested parties and we no longer have opposition," said Laura Lee Viergever, the association's director of policy.

The specialty tier pricing system for prescription medications was introduced by insurance companies with Medicare Part D as a way to control overall costs and steer consumers to generics and lower-priced drugs. The system is now commonly used by commercial health insurers.

The pitfall for those with a chronic illness – including those with cancer, multiple sclerosis, rheumatoid arthritis, blood diseases, hepatitis C, Crohn's disease, transplants and more --- is that the tier system allows insurance plans to move the most expensive specialty drugs, ones with no off-brand or generic alternative, to Tier 4 with no notice. This can catapult the cost of a medication from a routine co-pay of $10 or $20 per prescription to thousands of dollars a month in "co-insurance" as a percentage of the drug's cost. The standard percentage charged for "specialty tier" drugs is between 25 and 32 percent in Virginia, according to a 2012 study of the Virginia Joint Commission on Health Care.

The cost of some infusion drugs, such as Rituxan for rheumatoid arthritis, "is close to $40,000 per dose," said Bev Williams, a Yorktown resident who has battled the disease for years and requires two treatments a year. Her insurance covers most of the cost, but it still leaves her responsible for $1,200 for each dose.

"It's not exactly what we wanted, but it's better than nothing," said Ward, who had hoped to require notice of a minimum of 60 days. "I'm mostly concerned with families living on a budget. It could throw you off completely when it's as high as a mortgage payment. You miss a dose and it starts other problems and causes other costs to the insurer."

Ward speaks from experience. After an abrupt change in her insurance a few years ago, she wasn't able to obtain her medication for six weeks. She begged and pleaded with her pharmacist for a one-week supply to no avail. It resulted in flare-up of her MS for the first time in seven years. "It caused so many other factors — I had to pay for home health care and large doses of other medication," she said. "This is just such a hardship on the family. You're talking about people's lives."

In June, after 18 years, Ward stopped taking Avonex, a medication that costs $1,500 a week. She cited hemophilia drugs as costing $30,000 a month. "At 25 percent, or even 10 percent, who can afford it?" she asked.

Doug Gray, executive director of the VAHP, puts the responsibility on the pharmaceutical companies and not the insurers. "The drug's prices are set by the manufacturers, not the health plans. They can price it at any price they like," he said. "Pricing has to do with what the market will bear. You're in a monopoly situation." The Joint Commission study reported that Tier 4 drugs are prescribed for 1 percent of commercial enrollees, but account for as much as 16 percent of spending on drugs. Among the most expensive are those for pulmonary hypertension with an average annual consumer cost of almost $11,000.

Gray credited the tier-pricing system with "enormous saving over the past 20 years. It delivers the best outcomes for the group overall and the best use of dollars." He added, "We understand the feeling. A specialty drug for a very rare disease is frustrating for them and us. They're (pharmaceutical companies) incented by return on investment to create a drug. We don't want to stop them."

But Ward believes insurance should make access to drugs affordable for all, including those with a chronic illness.

"It's expensive to have these illnesses and to maintain quality of life. I'm able to serve in this House of Delegates because I'm able to afford my prescription," said Ward.